Neil and I decided that we needed as clear of diagnosis as possible before deciding about continuing with the pregnancy. We scheduled a fetal echo cardiogram, second opinion ultrasound, meeting with the paediatric surgeon and paediatric cardiologist.
We had some good news this week. No heart abnormalities, despite the heart being deviated to the right side of the chest by the stomach and bowel. The cardiologist reassured us that functionally the heart was fine.
The paediatric surgeon explained the surgery to us, the risks, and prognosis based on her understanding of our case. The surgeon wanted us to understand that we were in a poor prognosis category because of the early diagnosis and an indicator called the Lung to Head ratio (I had an MRI later on that would also show 1/3 of the liver in the chest which is also indicative of a poor prognosis).
However, every doctor consistently said the same things: some babies with a good prognosis end up doing badly and some babies with a poor prognosis do well. Some even become 'proper sportsmen'. A 3 month hospitalisation. These babies have a higher chance than average of having another disability like hearing loss or learning disability. They tend to be behind developmentaly then catch up by age 2. Reflux and feeding is usually an issue. It is very hard to predict the outcome. One doctor said, "look, it is a leap of faith really, some people can't even handle the best case scenario and decide to terminate the pregnancy". I was struggling with our decision to continue with pregnancy. My main predicament: who chooses the circumstances that will be in?
I had a dream that I was holding our baby in the hospital, the doctors and nurses were in the background. I felt like I couldn't breathe. I put the baby's oxygen tube into his nose. I could breath again. I was changing his diaper, but he got cold. I wrapped him in a blanket and he laughed. I woke up understanding that I was already a Mum, deeply connected to the little baby growing in my belly. There was no way I could terminate the pregancy - I needed to accept our situation. I was pretty over statistics and just hoped that our baby would be in the lucky 10, 20, 30, 50% that survived. I hoped for a miracle baby and the strength the survive if he didn't live. With my background as a special ed teacher and Neil's physiotherapy experience, would be excellent parents to a child with a disability.
A 10 year boy living with cancer was interviewed on a morning show this week. He was an author, and asked to provide advice for families that had sick children. He simply said, "Be brave." I burst into tears.